Questions Surround Handling of Taser Assaults on Disabled Patients

1 Aug

This story is out of California. Specifically, the story “Questions Surround Handling of Taser Assaults on Disabled Patients” comes from the California Report, a public radio program.

Someone using a stun gun like a cattle prod assaulted a dozen patients at the Sonoma Developmental Center last fall, inflicting painful thermal burns on their buttocks, arms, legs and backs.

The center’s in-house police force, the Office of Protective Services, had a suspect from the start. An anonymous whistle-blower called a tip line in September 2011 and accused Archie Millora, a caregiver at the Sonoma center, of abusing several profoundly disabled men with high-voltage probes.

The parallels between this and the Judge Rotenberg Center are obviously going to be made. Except that this isn’t part of any sanctioned “therapy” and, unlike JRC, there is no constant video monitoring.

What does exist is an internal police force. Which “often fails to conduct basic police work”:

As part of an ongoing investigation, California Watch has detailed how the institutions’ internal police force, created by the state to protect the vulnerable residents at these state homes, often fails to conduct basic police work when patients are abused and harmed.

The full text of the story is online and the audio is here:

—
by Matt Carey

Scarborough remarks unite much, but not all, of autism communities for a brief moment

26 Jul

Joe Scarborough is in the news. Yes, he works in the news, but he’s in the news for comments he made about the Aurora shooter:

“You have these people that are somewhere, I believe, probably on the autism scale, I don’t know if that’s the case here, but it happens more often than not, people that can walk around in society, that can function on college campuses, can even excel in college campuses, but are socially disconnected. I have a son who has Asperger’s who is loved by everyone in his family and who is wonderful, but it is for those that may not have a loving family and a support group and may be a bit further along on the autism spectrum, an extraordinarily frustrating, terrible challenge day in and day out. and so, I do think, again, I don’t know the specifics about this young man, but we see too many shooters in these type of tragedies bearing the same characteristics mentally.”

This has brought together various and disparate parts of the autism communities asking for a retraction. From the Autistic Self Advocacy Network (ASAN) to the Age of Autism blog. AoA even linked to a petition set up by Rachel Cohen-Rottenberg.

Such unity of voice should be telling Mr. Scarborough something.

I don’t think he got the message, though. In a follow-up to that statement, Mr. Scarborough wrote:

During a debate regarding the recent Colorado shootings, I suggested that the Aurora tragedy should make Americans focus more on mental health in this country. I also stated that my own experiences raising a son with Aspergers made me keenly aware of how important strong support systems are to those who might otherwise be isolated.
The growing Autism epidemic is a tremendous burden for children, parents and loved ones to endure. My call for increased funding and awareness for Autism and other mental health conditions was meant to support the efforts of those who work every day to improve the lives of Americans impacted. Those suggesting that I was linking all violent behavior to Autism missed my larger point and overlooked the fact that I have a wonderful, loving son with Aspergers. Perhaps I could have made my point more eloquently.
I look forward to continuing my work with wonderful organizations like Autism Speaks to provide badly needed support to millions of Americans who struggle with Autism every day

That nod to Autism Speaks brought on some criticism which demonstrates how this story shows the divisions within the autism communities even in this story.

Mediaite.com (a site I was previously unaware of) has at least three articles on the Scarborough story:

Autistic Journalist Demands Joe Scarborough Retract Comments Linking Autism To Aurora Shooting

Followed by these two with a partial focus on Autism Speaks:

Autism Speaks Whispers Response To Joe Scarborough’s Aurora Slur

and

First Autistic Presidential Appointee Lambastes Joe Scarborough And Autism Speaks

I thought I’d never heard of Joe Scarborough before. I forgot that he is or was a supporter of the thimerosal-causation idea and had interviewed Robert F. Kennedy Jr. on Kennedy’s “deadly immunity” articles (these ran in Salon.com and Rolling Stone. If you are unaware of Deadly Immunity, the piece had five corrections after being published and Salon has since retracted the article.

A comment from Joe Scarborough in that interview:

Maybe it’s five years from now. Maybe it’s 10 years from now. We are going to find out Thimerosal causes, in my opinion, autism.

It’s been more than five years since then and the support for the idea has only gotten worse.

I am actually somewhat surprised that Mr. Scarborough received such criticism from those promoting the notion of mercury causation.

For a brief moment, a call for respect for autistics trumped support for an old ally of the mercury causation movement.

—
by Matt Carey

note: I made a few corrections, including changing the title, to this piece shortly after publishing it.

How Research into Chronic Fatigue Syndrome Turned into an Ugly Fight

24 Jul

Judy Mikovits is a researcher who, in recent years, has focused on chronic fatigue syndrome. In her work she published a paper potentially linking chronic fatigue syndrome to XMRV (Xenotropic murine leukemia virus-related virus). In her unpublished work, her team discussed the possibility that autism was also linked somehow to XMRV.

There has been much drama involving Judy Mikovits, her research and her former institution (the Whittemore Peterson Institute) over the last year.

The Daily Beast has an interview with Judy Mikovits. The first since the legal issues arose last year. How Research into Chronic Fatigue Syndrome Turned into an Ugly Fight. The interview gives her side of the story in much of the events. One can read them at the Daily Beast, but I’ll focus on this section here as it applies to the science involved:

Meanwhile, other research groups around the country were trying to replicate the 2009 results, but in the two years that followed, almost all had failed. The word “contamination” began to surface more and more frequently.

In the summer of 2011, Mikovits and her young lab assistant, Max Pfost, began poring through their notebooks, trying to find where such a contaminant might have entered their process.

In July, she says, she found it—an entry from March 2009 indicating that a culture of the XMRV virus had been placed into the same ice chest with the rest of the lab’s blood samples. Mikovits says she was out of town the day this occurred.

To this reader, this is a sign that the upcoming multi-center attempt to replicate the XMRV/chronic-fatigue-syndrome work is going to come out negative (like the multiple other XMRV/CFS studies published so far trying to replicate her work). There was contamination in her lab’s process.

This does not speak directly to the XMRV/autism work, but two papers have:

Lack of Infection with XMRV or Other MLV-Related Viruses in Blood, Post-Mortem Brains and Paternal Gametes of Autistic Individuals

PCR and serology find no association between xenotropic murine leukemia virus-related virus (XMRV) and autism.

So, we have an unpublished result supposedly linking autism with XMRV from a laboratory where the principle investigator is telling us there was a contamination issue and two papers saying there is no detectable link?

While I doubt the XMRV/autism story will die out completely, it strikes this observer that it’s time to look elsewhere for answers.

Joe Scarborough On Autism Remarks: ‘Perhaps I Could Have Made My Point More Eloquently’

24 Jul

Joe Scarborough is a talk show host. One who yesterday made a comment about autism and the type of people who do things like the Aurora Colorado shooting.

In regards to the Aurora Colorado shooting incident, he made the following comment:

“You have these people that are somewhere, I believe, probably on the autism scale, I don’t know if that’s the case here, but it happens more often than not, people that can walk around in society, that can function on college campuses, can even excel in college campuses, but are socially disconnected. I have a son who has Asperger’s who is loved by everyone in his family and who is wonderful, but it is for those that may not have a loving family and a support group and may be a bit further along on the autism spectrum, an extraordinarily frustrating, terrible challenge day in and day out. and so, I do think, again, I don’t know the specifics about this young man, but we see too many shooters in these type of tragedies bearing the same characteristics mentally.”

Which has had quite a backlash from the autism communities. Yes, various and disparate segments of the autism communities are complaining about the statement.

Today he has tried to clarify his position (from a story: Joe Scarborough On Autism Remarks: ‘Perhaps I Could Have Made My Point More Eloquently’)

During a debate regarding the recent Colorado shootings, I suggested that the Aurora tragedy should make Americans focus more on mental health in this country. I also stated that my own experiences raising a son with Aspergers made me keenly aware of how important strong support systems are to those who might otherwise be isolated.
The growing Autism epidemic is a tremendous burden for children, parents and loved ones to endure. My call for increased funding and awareness for Autism and other mental health conditions was meant to support the efforts of those who work every day to improve the lives of Americans impacted. Those suggesting that I was linking all violent behavior to Autism missed my larger point and overlooked the fact that I have a wonderful, loving son with Aspergers. Perhaps I could have made my point more eloquently.
I look forward to continuing my work with wonderful organizations like Autism Speaks to provide badly needed support to millions of Americans who struggle with Autism every day.

Is this in response, at least in part, to the Change.org petition Joe Scarborough, MSNBC: Retract your statements about autism and the Colorado shooting? That petition has gathered nearly 5,000 signatures in a day.

If this is the sort of criticism Mr. Scarborough is trying to deflect, I suggest he may have to work a bit harder to quiet the critics.

—
By Matt Carey

note: I edited this shortly after posting to finish the incomplete first paragraph.

Open Letter to the Media in the Wake of the Aurora Shootings

23 Jul

My guess is that many of us saw this coming: the point when public commenters would speculate that the Aurora Colorado shooter was autistic. Joe Scarborough may have been the first, and likely is not the last.

The MSNBC host said he “did not want to generalize,” but that he knew who was responsible as soon as he heard about the shooting. “I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society, it happens time and time again,” he remarked.

“Most of it has to do with mental health. You have these people that are somewhere, I believe, probably on the autism scale,” said Scarborough, whose own son has Asperger’s syndrome. “I don’t know if that’s the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses, they can even excel on college campuses, but are socially disconnected.”

Knowing this sort of speculation would happen (remember the Virginia Tech massacre? “While early media reports carried speculation by South Korean relatives that Cho had autism, the Review Panel report dismissed this diagnosis”) is not the same as being able to prepare for how to respond. As frequent readers will likely recall, I am often at a loss for words when events stretch the boundaries of appropriateness.

In place of any comments–or inability to make such comments–let me point you to Kassiane at Radical Neurodivergence Speaking who has written an Open Letter to the Media in the Wake of the Aurora Shootings.

I am an Autistic adult. In the wake of the tragic shootings in Aurora, Colorado, my community was sitting not only in the sadness that all such tragedies bring, but also in fear and anticipation that once again, we would be your scapegoat. Once again, you would start declaring that we and the killer had the same neurology before the bodies were even cold, before the initial tears had dried.

And again, you did not disappoint. Again, you went to declare the killer mentally ill or Autistic before you even possibly had a chance to talk to anyone qualified to make those calls. Again, you cast yet another layer of suspicion on my community. Again, you made me someone to be feared.

Here’s the deal, neurotypical folks of the media: You are far more dangerous to us than we are to you. The mentally ill and the developmentally disabled are far more likely to be your victims than you are to be ours.

And Kassiane backs up what she says. I encourage people to go over and read the Open Letter in full. And forward it to people who bring up this autism speculation.

What projects are being funded in autism research? Part 1: vaccines and GI issues

23 Jul

The Office of Autism Research Coordination (OARC) rolled out a new web-based tool to explore research projects in autism. The IACC/OARC Autism Spectrum Disorder Research Portfolio Analysis Web Tool has already been discussed here at Left Brain/Right Brain, but I thought it was worth doing some exploring using the tool. In particular, let’s see what, if anything, is happening in some of the “hot button” issues from some segments of the online parent community.

I put in simple search terms. First was “gastrointestinal”. I found 11 projects ongoing in 2009 and 14 projects being funded in 2010. There is some overlap between the two years (as you would expect), and some projects mention the term “gastrointestinal” but are not focused on the topic (for example, this project on treating sleep issues in autistic children). But this project, Analysis of the small intestinal microbiome of children with autism, would seem to be right on target for what many parents are asking for. As is Novel probiotic therapies for autism. Much of the discussion of gastrointestinal function in autistics seems to be focused on the “leaky gut” theory. I would think that this study (noted in detail below) would be of particular interest to many.

Are autism spectrum disorders associated with leaky-gut at an early critical period in development?

Although there is general consensus of greater prevalence of gastrointestinal (GI) distress in individuals with autism spectrum disorders (ASD), the nature of the link is unknown. There is preliminary evidence to suggest that GI distress in ASD may be associated with “Leaky-Gut” (i.e., increased permeability of the intestinal mucosal barrier due to either delayed or abnormal development), as shown by a study showing higher-than-normal prevalence in ASD children 4 – 16 years of age (e.g., D’Eufemia et al., 1996). During normal digestion, the mucosal barrier is responsible for keeping digestive enzymes out of the intestinal wall. Recent evidence shows that if these powerful degrading enzymes enter the wall of the intestine, they will cause major damage to the intestinal wall as well as inflammation in the brain. Investigators hypothesize that ASD may be associated with Leaky-Gut early in development, which combines, or interacts, with diet (breast-milk, formula, solid foods) leading to intestinal wall damage and inflammation in: 1) the intestine, which could explain the GI distress, and 2) in the bloodstream, which could reach and damage the developing brain, thus contributing to the onset of ASD itself. In this study, researchers will track key aspects of GI function in Low-Risk and “High-Risk” infants (i.e., infants who have an older sibling diagnosed with ASD), including: 1) signs of Leaky-Gut, 2) symptoms of GI distress (e.g., diarrhea, reflux, constipation), 3) diet (breast-milk vs. formula), and 4) evidence of digestive enzymes and inflammatory markers of cell death in the bloodstream. They will correlate GI, diet, and inflammatory measures with results from cognitive, visual, and behavioral tests, including standard ASD diagnostic tests, at two and three years of age to determine if Leaky-Gut is associated with the development of ASD.

How about vaccines? Four projects in 2009, four in 2010. Three of those projects are the same from 2009 to 2010, and those three are funded by Autism Speaks. Two are funded by the Federal Government: Vaccine safety datalink thimerosol and autism study and A primate model of gut, immune, and CNS response to childhood vaccines. The second of those projects is, I believe, a follow-on study to the Laura Hewitson primate study (many supporters of that work complain that there has been no follow on to it)

While we are at it, there are four studies mentioning “mercury” in 2009, nine in 2010 (granted, in 2010 research funded by SafeMinds was added to the database. As they are a major proponent of the mercury hypothesis, it isn’t surprising that four of these studies were funded by them).

I am reminded of past criticisms about environmental risk factors levied at the IACC. In past years there was a discussion point that the IACC Strategic Plan did not include an emphasis on environmental risk factors for autism. A simple review of the strategic plan showed this not to be the case. Oddly enough, one could not find discussion of the facts on the websites of those claiming to be calling for environmental risk factor research, only here at Left Brain/Right Brain.

It has also been discussed here that the IACC does not control the research budgets and no direct control over what projects actually get funded. The IACC is an advisory committee. The fact that most research project items in the Strategic Plan do get funded suggests that the IACC is an effective advisory group.

—
by Matt Carey

note: I serve as a public member to the IACC, but my opinions and comments (even those about the IACC) are my own.

Stem cell “therapy” for autism in the Philippines?

23 Jul

One would think so from the title of the story in a Philippine website: “ Stem Cell Therapy: Cure For Autism?” I worried, has another overseas location started in the stem cell “therapy ” businesses?

Apparently not. The story is about a Philippine family, but the Clinic is in Germany and the stem cells are fetal lamb cells.

Let’s start with a statement from the end of the story :

Unless you’re a mother, and you’ve searched high and low for treatments for your child, there’s nothing to lose, really. Yes, it’s quite costly but what parent would not do that for their child

There’s nothing to lose. It’s so sad to see it in black and white like that. Of course one must be cautious not to assume this means she feels her children is “nothing to lose”, but instead is saying that she feels that there is no chance of something going wrong. Either way, such statements should not be put in print.

Is it really “stem cell” therapy? They are calling it “fresh cell” therapy.

Ethan underwent what is called Fresh Cell Therapy, a biological treatment by which specially selected fresh or live cells or cell extracts of donor animals, usually sheep, are injected into the human body for treatment of various ailments or rejuvenation purpose.

The procedure uses fresh cells from the fetus of a lamb and takes not more than three hours from harvesting to production to injection of the cells to the patient. All procedures are done in their clinic in Germany.

They seem to be rebranding their “fresh cell” idea to capitalize on the publicity around stem cell research.

The story could form the basis for a thousand words essay by one of the skeptic bloggers.

Unlike autologous stem cell transplant, in which blood-forming stem cells are removed, stored, and later given back to the same person, fresh cell therapy is non-invasive and is only injected to the body.

It’s “non invasive”, it just involves injecting fetal lamb cells into the body.

The story continues with standard alternative medicine themes: they can’t wait for proof, a large percentage (but never too high) report benefit, benefits can be seen quickly but long term therapy is needed (5-10 years of expensive therapy).

This story is filled with red flags that make such stories frightening. And all the hooks of false hope that are sure to pull in some more families.

—
By Matt Carey

Exploring the Proposed DSM-5 Criteria in a Clinical Sample

20 Jul

The potential effect of the change from DSM IV to DSM 5 has generated quite a lot of interest within the autism community. Yes, I realize that is an understatement. In her presentation to the IACC, Sue Swedo (chair of the neurodevelopmental disorders work group for the DSM 5) stated that comments to the DSM 5 committee are running 10x higher for autism than any other diagnosis.

This week another study on the potential changes caused by the change to DSM 5 was published: Exploring the Proposed DSM-5 Criteria in a Clinical Sample. This from York University in Toronto, Canada. This study points, as others have, to the DSM 5 not diagnosing children who would meet the autism criteria under DSM IV. 19% of children studied with autistic disorder under DSM IV would not be picked up by DSM 5, according to this study. A much larger fraction–83%–of those with DSM IV PDD-NOS diagnoses would not receive ASD diagnoses under DSM 5 (again, according to this study).

Here is the abstract:

The proposed DSM-5 criteria for Autism Spectrum Disorder (ASD) depart substantially from the previous DSM-IV criteria. In this file review study of 131 children aged 2-12, previously diagnosed with either Autistic Disorder or Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), 63 % met the new DSM-5 ASD criteria, including 81 % previously diagnosed with Autistic Disorder and only 17 % of those with PDD-NOS. The proportion of children meeting DSM-5 differed by IQ grouping as well, with higher rates in lower IQ groups. Children who did meet criteria for ASD had significantly lower levels of cognitive and adaptive skills and greater autism severity but were similar in age. These findings raise concerns that the new DSM-5 criteria may miss a number of children who would currently receive a diagnosis.

–by Matt Carey

Autism Speaks accused of disability discrimination

20 Jul

Michelle Diamond of Disability Scoop has this story: Autism Speaks accused of disability discrimination. The basic story appears to be this:

A single mother, unemployed, applied for a job as a walk director for Autism Speaks. After going through a long interview process she was offered the job. The day before starting she informed Autism Speaks that she needed some accommodation one day a week because of her autistic child– such as a shifted work day or day without pay. Autism Speaks, it is alleged, refused to make an accommodation, so the mother sought and found child care for the day. However, Autism Speaks rescinded the job offer anyway according to the complaint.

Per Disability Scoop:

In her suit, Greggs is seeking compensatory and punitive damages. Nonetheless, she said the legal action is not about money but principle for her. Once a supporter of Autism Speaks, Greggs said she is outraged.

“They say one thing and they do another,” the Upper Marlboro, Md. mom said of the nonprofit. “You can’t say that you’re for helping families with children with autism and then you can’t give me an accommodation.”

When I first heard of this I thought of a previous discussion about Autism Speaks where I noted that at one level it isn’t about who works in every job at Autism Speaks, it’s about getting the job done. That may be a good idea in theory, but examples such as this one, if true, would speak to the need to have members of the community (autistics and parents) throughput the organization.

Disability Scoop has a short quote (one can’t expect a detailed response with pending litigation) from Autism Speaks:

“Autism Speaks is committed to employing parents and other family members of people with autism, as well as individuals on the spectrum,” the organization said.

Again, the full story at Disability Scoop.

By Matt Carey

Scientist Patricia Rodier, Trailblazer in Early Origins of Autism, Dies

19 Jul

Autism researcher Patricia Rodier, Professor at the University of Rochester, has died. U. Rocherster discusses this on their website as Scientist Patricia Rodier, Trailblazer in Early Origins of Autism, Dies.

Patricia Rodier, Ph.D., the first scientist to formulate and study the idea that autism can originate long before a child is born, died May 3 at Strong Memorial Hospital. She was 68.

An embryologist specializing in the nervous system, Dr. Rodier completely changed the way we think about the development of autism. While many believed that the disorder arose very late in pregnancy or in the early part of an infant’s life, Dr. Rodier’s research turned that widely held, but unproven, belief upside down. Her work established that genetic and environmental factors can also spur the development of the disorder as early as three weeks into a pregnancy, when the first cells of the nervous system start to develop.

Prof. Rodier became interested in autism relatively late in her career, but early in the modern era of autism research: 1994. She heard about a study showing a high prevalence of autism in adults who had been exposed to thalidomide prenatally. She gathered a team to investigate how autism develops early during gestation.

She wrote an article in 2000 for Scientific American, The Early Origins of Autism (also available online in full here). A lot has happened in autism research since then, but much of what she did and had to say is very relevant today. For example, she performed research using post-mortem brain tissue. She notes that the twin studies, even those available at the time, showed that more than simple inheritance was at play. She notes multiple prenatal environmental exposures which increased autism risk (thalidomide, maternal rubella infection and valproic acid). She notes how the data, even then, pointed to multiple genes being involved.

In short, many ideas which are considered “new” (e.g. multiple genes as a risk factor) or that “mainstream medicine refuses to consider” (e.g. environmental risk factors) are discussed in that 12 year old article.

Another part of Prof. Rodier’s research which became extremely relevant in the discussion of autism causation was her work on mercury exposures. From the U. Rochester webpage:

A professor in the Department of Obstetrics and Gynecology at the University of Rochester Medical Center, Dr. Rodier was also a world expert on mercury toxicity, studying how single exposures to the chemical during pregnancy influence a baby’s brain development. To this day, much of the research being done on mercury exposure and birth defects is based on Dr. Rodier’s early findings.

She was likely the one person in the world who had strong expertise in both autism development and mercury. She was called upon as a witness for the Omnibus Autism Proceeding (discussed here and here). Her expert report for the OAP is an excellent resource for people trying to make sense of the autism/mercury notion.

I exchanged emails with Prof. Rodier a few times to discuss her work. While I never actually spoke with her, the “voice” of her emails was always very kind. I found out about her passing when I was considering contacting her again recently. I wish her family well.

–by Matt Carey

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